Settled ...

Adam continues to improve little by little. This weekend he returned to playing online with Ryan & Jake, which he's not done since shortly after his birthday. It's another indication that's he feeling better in himself. He's got zero stamina when it comes to any form of exercise; a walk up the corridor from our room to the lift and he's worn out. But then it's not just the last couple of weeks, but nigh on a month before that in the UK when he was almost bedridden. It will take a long time for any level of fitness to return. He's still got no appetite, though is eating more simply because he's putting up less resistance when being spoon-fed at present. Since August he's lost five kilos, a lot for a 9-year-old … and it shows. He's had no aches or pains, and from today is no longer on any form of pain medication whatsoever - so we'll see how that works out in the coming days.

We have repeat bone marrow biopsies on Thursday, and PET/CT scan next Monday. The results will determine our next course of action, and in particular whether or not we'll be able to return home this year. Whatever the outcome we'll have to start making our plans for the festive season. Last year the five of us spent Christmas out in Greifswald, if this year we have to spend it out in Grand Rapids then so be it. We'll sort things out as best we're able. Obviously fingers-crossed for stable scans or better, and agreement from the Royal Marsden that we can continue Adam's new treatment regime back in the UK under their guidance. At the moment, however, we're not really thinking any further forward than tomorrow, and whether Adam will need blood and platelets before his bone marrow procedure on Thursday.

Improvement ...

Adam has been doing okay. This week has felt a little weird because it's been less full-on than the past two weeks when we were in clinic almost all day, every day. Yesterday was Thanksgiving, one of the biggest days of the year out here. A very kind family and their friends gave up their day to come to the Renucci Hospitality House and cook a huge (and I mean enormous) Thankgiving dinner for the people staying here. Two years ago the family found themselves at Renucci over Thanksgiving whilst their daughter was being treated in the hospital, so this year they wanted to return the kindness that was shown to them. There is a seemingly endless generosity of spirit that surrounds this place, and long may it continue. As reserved Brits abroad we may not be quite as effusive as some of our fellow guests, but the warmth and generosity of people certainly isn't lost on us.

For the last few days Adam has had none of the aches and pains that have so troubled him these past weeks. He's been a bit more active each day, and walking a little further a little more often, albeit with plenty of encouragement from us (or nagging as Adam would describe it to you). That has brought it's own aches, but normal ones that come with exercise after inactivity. He's not had anything approaching a fever and apart from needing to get platelets regularly now he's in reasonable shape … considering.

Our most immediate problem is Adam's eating. He has no appetite whatsoever. Through the events of the past five or six weeks he's lost a lot of weight, and our first goal is to maintain him where he is now. I can tell you that getting a child with zero appetite to eat regularly is both a relentless and thankless task. But we are doing what we can, including a daily nutritional supplement. Hopefully, as Adam becomes more active some sort of appetite will eventually return, but with the different drugs he's on right now it's completely impossible to predict. What we need most of all is for those aches, pains and fevers that disappeared long enough to enable us to fly here, only to reappear a week later, not to come back anytime soon.

I regularly post photos on Adam's Facebook and Twitter pages, but not too many on here … so here are a few from the time we've been out here. They are in time order, the latter ones taken yesterday when we were out for a short Thanksgiving stroll.

We've been joined in Michigan by a family from Spain that we first met in Greifswald last year. Alejandro is a five year-old boy with relapsed neuroblastoma and his parents have brought him here to seek treatment with Dr Sholler. They arrived last week and by some coincidence ended up in the room next door to us at Renucci. Last night Ale and Adam played together on the Nintendo Wii, it was by far the most active Adam has been in a fortnight. Little Ale is having a tough time right now … we really hope things start to improve soon now Dr Sholler is on the case. And with a bit of luck I'm sure there will be opportunities for more games playing in the days ahead.

Progress ...

Today Adam walked from the lounge on the ground floor of Renucci Hospitality House to the lift, and from the lift to our room on the 4th floor. The correct term for this is 'progress'.

Bloods were ok today; neutrophils have dropped back a lot to what we'd considered normal for Adam, but Haemoglobin and Platelets held steady which was a little surprising (the doc had even pre-ordered Platelets in expectation). Having gone to clinic thinking we'd get a platelet transfusion at least we were in, bloods done, port accessed, got chemo, port de-accessed, and out again in 90 minutes. The correct term for this is 'progress'.

The correct term for how we're feeling right now is … pleased … caveated with not getting carried away.

A Tough Time …

We were in clinic slightly after 8am on Monday, a long and difficult day ahead, with Adam's new port placement scheduled for early afternoon. We'd had a reasonable weekend, Adam's mobility problems preventing us getting out and doing anything, but that aside he was in good spirits. As well as the surgery it was day one of the new treatment combination we're trying. It's a twenty-one day cycle, and we rescan the following week - which means we're out here until the start of December at least. We could have enrolled Adam on a different trial that might have got him back home sooner, but it's our decision to go this route.

We were met in clinic by our nurse, Julie, who gave us a run through of the schedule. Adam was nil-by-mouth in preparation for the portacath insertion. In the morning he was due to get a full blood count, Benadryl, Tylenol, platelet transfusion, repeat blood count, Zometa (bone strengthener to help with Adam's disease/pain) and then downstairs for anaesthesia and surgery. The nurse got a cannula (or an IV as they're called here) into Adam's arm (the third he's had since we arrived) and took bloods. The surgeon wanted his platelets to be above 100 for the procedure. We skipped Tylenol, and knowing what we know now we'd have skipped Benadryl too, but we didn't.

We got settled into 'Infusion Services' and our appointed nurse there set everything up. Almost as soon as the Benadryl had started going in, Adam began complaining of burning pains up his right arm, or more specifically in the vein running up it. Next the platelets went up at 250ml/h; the pain intensified, Adam begged him Mum to turn the machine off "Pretty, pretty please, Mum. Turn it off, turn it off." he sobbed. The problem is you can't turn platelets off, they clot. Once they're up, they've got to go in. And in any case we were on a schedule to get the port fitted; with nothing but peripheral IV access if we'd stopped then we'd only have wound up in the same situation the following day. Or so we thought at the time, with hindsight we know it wasn't the platelets themselves that were the problem, nor getting an infusion via the cannula per se. It was the sodding Benadryl that we never really needed that caused all the trouble. With Adam becoming more and more distraught we were moved out of the open curtained area and into a side room. Eventually the Benadryl kicked in to some positive effect and Adam, exhausted from the pain, pleading and distress, drifted off to sleep.

The blood count taken when we first arrived in clinic had Adam's Hb at 7.8, Platelets 68, WBC 3.01. The nurse arrived to take blood for a repeat count, to verify the platelets were high enough for surgery. Trying to get the peripheral IV access to bleed back was fun. The nurse pulling back, the technician squeezing Adam's arm, Adam screaming at her to get off because his arm was still hurting like hell. And no blood coming out. Eventually after several minutes and a number of repeat performances they did manage to get a couple of millilitres, enough for the blood count they needed.

We'd already decided there wouldn't be anything else going through the peripheral line except Adam's anaesthetic. Zometa could wait until the following day, when Adam's port would be in and accessed. Adam wanted to be sure his cannula would be out, and his port accessed, when he woke up following surgery. We assured him that's how it would be.

Julie came in. Adam's blood counts had come back. His Hb had dropped to 6.8, platelets had fallen to 56, and WBC had risen to 4.0. For those not familiar; Hb is haemoglobin the red blood cells that carry oxygen round the body, platelets are responsible for clotting, and WBC (White Blood Cells) is the immune system and infection fighting cells. This was not the expected result of a platelet transfusion. Obviously with all the messing around the blood sample from the peripheral IV had been spoiled. But they'd still need an accurate record of the true platelet count. So the phlebotomist had been paged and was on her way to take blood from Adam's other arm, as the clock was ticking to meet our slot for surgery. The phlebotomist is the super-fast blood count person. She just comes in, whacks on a tourniquet, finds a vein, sticks a needle into it, draws some blood into a vial, and is on her way again, job done. Not what Adam is used to, but he's quite good with most things provided he's given a little time to process what needs to happen and retains at least some control over how to achieve it. So a few minutes later he was telling said phlebotomist "When I say I'm ready I'll close my eyes, you count 1, 2, 3, and then stick the needle in." And that's how it was. And we duly waited for the results.

Julie came in. Adam's blood counts had come back. Hb and platelets the same as before, WBC further increased to 4.65. He'd now require an immediate second platelet transfusion in order to get his port put in, and was also now in need of a blood transfusion! What can you do? It's no use getting up and saying enough is enough. This wasn't optional. So we waited for the second bag of platelets. This time A-positive for A-positive patient, not that it should matter (previous was A-negative which can be given to A-positive patient, but not the other way round). Up they went and the machine which had been gently infusing hydration at 10ml/h to keep the line open was cranked back up to 250ml/h. Now, I may not have actually held my breath, but I did think "here we go again." Nothing. Not a peep out of Adam. These platelets went in without any discomfort whatsoever. Bloody, arsing, Benadryl.

Platelet transfusion finished, another blood draw from the IV, another wait, and finally confirmation that Adam's platelets were now a more healthy 134. We were good to go downstairs to the surgical area. It was mid-afternoon, three hours later than planned. Adam hadn't eaten since the night before, and had drunk nothing since 9am. Just great.

We went through the routine downstairs with the surgeon and anaesthetist, signed the necessary, kissed Adam on the forehead as they sent him to sleep, and left.

Port placement went without a problem. They did a mirror image on Adam's right side of the port he'd had removed on his left side a couple of weeks ago. Adam woke from the anaesthetic saying he wanted to go back up to the 10th floor in the bed. That was fine they said.

What they didn't tell him was that when he got back up to the 10th floor he'd have to get out of the bed. Or that he was due IV ondasetron as a ten minute infusion through his port, followed by chemotherapy given as a slow push. He was still in a Propofol induced angerthon at this point. He WAS NOT getting out of the bed. And YOU ARE NOT giving me ondasetron. And YOU ARE NOT leaving my port accessed overnight. And JUST GET OFF ME AND LEAVE ME ALONE. The nurses put a hot blanket and pillow in one of the comfortable chairs to try and encourage Adam out of the bed. He was having none of it.

"What's the point in me struggling to get in that chair when I've only got to go and get out of it again to get in the pushchair? That's a stupid idea. Why can't I go straight in the pushchair?"

"You can Adam."

"Good."

Adam got the anti-sickness, he got the chemo, and we left to head back to the Renucci House. It was near 6pm. He was very sore, quite rightly pissed off, tired and hungry.

The following morning we were due back in the hospital at 8:30 for the Zometa, and a blood transfusion. We were late. It took a full 45 minutes to get Adam out of bed. His right arm was numb, his port was hurting, his legs were aching, during surgery they had accessed his port and pointed the line up so when it then dangled down it caused the dressing to tug at his skin. We made it back to the 10th floor eventually, and at Adam's request we settled back into the same room as the day before. His temperature was 37.6 when we arrived and so the nurse took blood for cultures 'just in case'. Eminently sensible we thought, though not what we are necessarily used to. He got some Tylenol to make him more comfortable, we watched some TV and a movie, he got the Zometa and blood; by the time we were done it was 4pm. His temperature as we left was 37.7 so we decided to leave his port accessed just in case something happened overnight and we needed to use it. If not (worst case that was actually best case) we'd go back up to clinic the following day to get it flushed.

We wheeled him back through the hospital to Rennuci, complaining that he was cold. By the time we got back up to our room on the 4th floor he felt hot. I took his temperature; 39.0°. So we about turned and back we went through the hospital to Helen De Vos Children's Hospital and, as it was now a few minutes past 5, on to the Emergency Room. There they invoked their fast track procedure which means they have to get vitals, bloods for the lab, bloods for cultures and start antibiotics within one hour. Adam looked pretty ill by this time. He really did not want to get out of his pushchair to get weighed (we ended up putting him in a weigh bed). And he really did not want to have his second visit from the phlebotomist in as many days (they take blood for cultures from both the central line and a peripheral vein when possible infection is indicated). Initially I thought we were going to have trouble, because the medical staff needing to meet their one-hour target started off looking a little impatient. However, once we explained that if they gave Adam a little time and space to process things he'd be fine, everything ran pretty smoothly. After a discussion with the on-call paediatric oncologist (to explain his allergic reaction to penicillin etc.) he had some antibiotics over a 30 minute infusion, some Tylenol for the fever and we were discharged back to Renucci.

Today we were back up in clinic to get Adam reassessed. He was again feverish, and got a second dose of antibiotic. This afternoon we came back to the Renucci House and he's alternated between watching TV and sleeping. He's clearly got something going on.

Right now it looks like the antibiotics have kicked in, though not necessarily in a good way. As I was typing this he's just called over to me from the bed in which he's trying to get to sleep "Dad. Quick. I think I've poo'd my pants."

And that, I must conclude, is a rather fitting end to a shit few days.

Confirmed ...

Adam's disease has, as expected, progressed. There are no new areas of disease, but increased intensity in skeletal uptake is seen on the PET scan. Bone marrow biopsies also confirm extensive progression, neuroblastoma now invades almost all of the bone marrow space. This coming week we are due to start a different combination therapy based upon Adam's genomic profiling. Tomorrow (Monday) he is due to have a new portacath surgically inserted.

His temperatures have been higher than they were last week, but not to the extent that he has spiked an actual fever. His leg is still giving him a lot of problems and he is mostly immobile.

Thank you for Adam's birthday wishes. He enjoyed the day (Friday) as much as was possible, and he had some nice presents. The morning was spent in clinic discussing scan/test results, but living a life that is impossible to explain to anybody who hasn't been through something like this, we got on with his birthday regardless. His leg was much improved from the day before, and I probably encouraged him to do too much. We went out during the afternoon, and stayed out for some food; when we returned he was in a lot of pain and discomfort. Not a good end to the day, so unfair on him, and nothing we could do to help. At one point, when no amount of shuffling would help, and no change of position brought any relief, he resorted to simply thumping his "Stupid, stupid leg".

Bone Marrows ...

Never the nicest of days, particularly so when you're without central line access and scheduled for 1pm in the afternoon. Both of which are down to us; we decided to have his central line removed, and we decided to have his bone marrow procedure moved up from Friday … Friday being Adam's birthday. Nothing to eat or drink since yesterday night, except for a little water up to 8:30am.

Adam's left hip 'ache' has intensified, we've had to resort to his pushchair today, whereas yesterday he was walking the corridors of the hospital. Add to that the discomfort from the cannula in his right arm, and the pain from the holes in his back and it's not been a particularly pleasant day. That said, Adam did spend the latter part of the afternoon on his bed, supported by no fewer than five pillows, singing daft made up songs and leaving us wondering precisely what it was they had given him during the anaesthesia. Particularly given that he slept peacefully afterwards and awoke with none of the crazed anger that usually accompanies these procedures.

He's gone from being nil-by-mouth to having to follow a restricted diet in preparation for tomorrow's FDG-PET scan. Tomorrow morning he's once again nil-by-mouth and will need another cannula inserted. This time, however, the scan is first thing in the morning and he won't be having a general anaesthetic. So should be out sooner, and won't be so bad.

Adam's central line, removed at St George's, grew two scanty Staphylococcus bacterial strains. Whether this means there was actually an infection present we don't know (I don't think you can quite make such a direct inference). However, we are keeping a close watch on Adam's temperatures to see whether the return of bone/joint pain will also be accompanied by fever which would suggest an infection was the cause of both, and that it has returned. If he remains afebrile, and the hip ache resolves itself again, we will probably end up blaming sorafenib.

Clinic ...

A very long day ended with us turning in sometime after 7pm, or past midnight UK time. Adam was shattered. We'd not actually determined what time they wanted us in clinic this morning, but it wasn't a complete surprise to discover it was 8am. We didn't quite make it, but we weren't too far off. A couple of debriefs of all the funny business that's gone on over the past three weeks; Alison and I were struggling to remember details such as dates, at one point we lost an entire week that Adam did manage to spend at home. Neither of us can actually remember that! Physical exam, blood work, schedule for the next few days, some waiting around for Adam to produce the required urine sample, and we were done.

Having reported to Dr Sholler this morning that Adam had no fevers and no pain, we've seen some slightly higher temperatures this afternoon (though still essentially normal) and he's started complaining that his left leg 'aches' again. He's been a lot more mobile today than at any time during the last three plus weeks, and has also been back on sorafenib (though that's now stopped again in advance of scans and possible change of therapy). We will see what tomorrow brings.

Bone marrow tomorrow means no food for Adam until after lunch, and PET/CT on Thursday morning requires a special diet for the preceding 24 hours. So the next 36 hours are going to be somewhat challenging food-wise. I'll leave that to Alison.

Arrival …

Long but uneventful journey. My first long-haul trip with Adam and I've got to say he's a good traveller. He's been very well, and in good spirits all day, despite being woken up at 5:45am. "I've only just got to sleep" he told me "It's nowhere near morning. You're so rude. You're just so rude."

I got my first lesson in US rules & regulations. Hadn't booked a return flight. Fine for Alison & Adam who have US Visas, not fine for me who has a 90-day Visa Waiver. Pronto march to the ticket desk to book a return flight for me. We flew Delta Airlines, service was great and drive from Detroit was straightforward … and extremely dull.

All checked in at the Renucci Hospitality House now. Clinic appointment with Dr Sholler in the morning …

Day - 1

Adam remains ok. No elevated temperatures since the start of the week. To be on the safe side, Alison took him up to Epsom Hospital to have his blood counts done this morning, and they are ok too. Taxi is booked for 6am. We just need to finish packing. And Adam just needs to have a bath, because he's not had one for a month. But I think we are good to go (I won't be taking anything for granted until the plane has actually taken off).

As Adam will be in the US for his 9th birthday next Friday we let him open a few presents at home this afternoon with his brother and sister.

No letting up … keep those fingers crossed.

Day - 2

Morning: Xbox Live with Jake and Ryan - loud and fun. Lunchtime: short walk and playing with fallen leaves - first time Adam's been outdoors in three weeks. Afternoon: TV watching and drawing unflattering pictures of me on his Boogie Board - quiet and unremarkable. Evening: sparklers in the garden and a TV movie - nice.

All good.

Day - 3

Adam's temperature has remained below 37° today, and he's remained well in himself. His port site looks clear with no visible sign of infection. Jake & Jess are back home now so hopefully we'll be able to enjoy something resembling a nice weekend at home. A couple of unremarkable days will do just nicely thank you very much.

Ok ...

Adam has been ok today. A little sore, but he's eaten well and hasn't had any temperatures. This morning he was up and out of bed early to play with Jake, then downstairs to play with Jess, then back upstairs to play with Jake again. He's not done much of anything except laze around in bed and watch TV since mid-morning, when Jake & Jess left to spend the night at my sister's house, but that's not such a bad thing.

We have our confirmed itinerary for next week. Appointment with our US oncologist on Tuesday, bone marrows on Wednesday, PET/CT on Thursday, Adam's 9th birthday on Friday. We don't know how long we'll be in America for this time; to prove the point, we didn't even bother booking a return flight home.

As every day is important and precious we moved our flight out back to Monday, so we get an extra 24 hours at home; meaning Adam, Jake and Jess get to spend Sunday together. Whilst part of me wants to put Adam on a plane tomorrow in order to ensure we get him out to America, we do have to weigh everything up carefully. It won't come as any surprise to hear that Adam would much prefer another day at home playing with Jake & Jess, than a day stuck in Grand Rapids with just me and Alison before the hospital visits start.